Sylvia Paul has been active for over ten years as a board member and managing director of the Children's Heart Foundation for children with congenital heart disease. In an interview, she talks about how funds are collected and what they are used for - and what role the Internet, crowdfunding and open science play. Sylvia Paul is a business manager and initially worked in the tourism industry, where she worked for several years in senior positions, including in the German Tourism Association. She later switched to the field of public relations and marketing, and worked as a press officer of the Arbeitsgemeinschaft Deutscher Flughäfen and as a federation coordinator of the private medical centers.
What prompted you to look after heart-sick children?
In the year 1999 I met Friedrich Ludwig Müller, who has worked as a PR consultant for Hans-Dietrich Genscher and Walter Scheel. At that time, he could already look back on a long-term experience in the area of fundraising with today's honorary president of the Stiftung Kinderheerz, Mr. Friedhelm Rentrop. He has, among other things, initiated the Karl and Veronica Carstens Foundation and the German Foundation for Monument Protection.
I have convinced myself to get involved with the heart children. Mr Müller was already thinking about the idea of an international charity for children with heart problems and wanted to publish all publications in German, English and French. In the end, however, we decided to build up a professional structure in Germany. Since then, the "Kinderheerz" Foundation has been supporting the furnishing of heart stations in hospitals all over Germany and important cardiac and cardiac research projects.
Keyword Internet: What percentage of your total donations have donations, promotions and shop sales that you have over your website http://www.stiftung-kinderherz.de take?
The Online Fundraising of the Stiftung KinderHerz is only in the development phase. However, we can see a general trend that the volume of revenues from proceeds and donations through our website grow year by year. However, they can not yet measure the sum of the donations, which are collected by traditional means over long-term donations and large donations. This is probably due to the fact that on-line donations are not (yet) typical for our organization
What is the reason?
My impression is that the instrument of on-line donation has so far been used primarily by those organizations that provide assistance in the event of a disaster. Where quick assistance is needed, the instrument of on-line donation is better adopted.
With us, however, many of our donors know us personally and long-term donor relationships have developed over ways other than the Internet. These people donate then usually not online.
Nevertheless, we are very satisfied with the structure achieved so far, because actions such as the KinderHerzwälder give us the opportunity to win people over this way for a commitment in favor of heart disease children.
Do you want to expand your online presence in the next few years?
The development of our website and the related shop is according to the principle: if someone can help us with a task, then we implement the project.
For example, the redesign of our website was given to us by the father of a heart child who works in this professional field. Unfortunately, the previous online revenue does not justify that we are making a major investment here, and in particular would fundamentally reorient the Web shop.
So you collect your money rather in a traditional way?
Correct. We organize charity events, for example, and also offer support for targeting exclusive charity events. In contrast to agencies, which organize charity events completely for an organization and then also carry out, we restrict ourselves to an accompanying and supporting role.
We help, for example, in press and public relations, make interesting contacts and look after attractive raffle prizes from the circle of our donors.
I know from some of our partners that they also communicate their events through social media channels. We ourselves have not done so far.
Well, this is connected with the self-understanding of the Kinderheerz Foundation. We have set ourselves the goal that the greatest possible portion of the income and the money donated is donated directly to the heart and therefore we have a very lean organizational structure. This, of course, means that we have to focus on our work. The creation and maintenance of social media such as Facebook, Twitter or Xing has so far failed due to lack of time and manpower.
We have had the idea, however, to present themselves more strongly in the social web for two years. And we have only recently intensively informed ourselves internally about how we would like to structure our profile in the field of social media in a structured and professional manner. However, as long as we are not able to provide the necessary resources, without personnel and time, without neglecting our work for the heart minders, we still take a step away from this step.
Have you ever integrated online elements, such as auctions, into a charity event?
Yes, I am aware of this possibility. One of our partners recently introduced an online auction into a charity event. We have pursued it with great interest but have not yet been able to integrate it into our own portfolio for charity events.
With such innovative methods, there is always a certain skepticism on the part of the organizers and unfortunately our own experience with them is missing. It will probably still be a while before online auctions become established as an integral part of our portfolio.
So do you rely on other strategies?
No, not necessarily. Good thing sometimes wants to have some time. The same was true of our children's heart forests. The idea was born many years ago.
But it took 2010 until October, until we had done enough convincing work to inaugurate the first Kinderhearts forest in Schleswig-Holstein. Today, there are already five forests, including a children's heart apple orchard in the Uckermark. Two more are about to be implemented.
“Crowdfunding” has been increasingly discussed in recent years as a new form of financing for art and cultural projects, but also for social projects. Do you see opportunities for your foundation here?
We have already received a small donation for our heart children over a project at Betterplace.org. Then we came up with betterplace. In addition, we have already designed a project for which we would like to raise donations for the Stiftung KinderHerz Foundation on a corresponding platform. We are currently negotiating with other cooperation partners and celebrities, which we would like to take part in the project.
As soon as the preliminary talks are finished and the presentation has been successfully implemented on our own project website, we will start our first project. Whether this will succeed us this year, or until the beginning of next year, I can not say at the present time with 100% accuracy.
How is donation money used?
Above all, we finance research projects. The treatment of heart children today and in the future can be done even better and with less burdens on the small body, which requires intensive research in cardiology and pediatric cardiac surgery.
The research results obtained can also be used to optimize further research projects.
Do you use research to encourage doctors and firms to develop new radiological procedures? How exactly does it look like?
A good example of how the research results obtained can be used to optimize further research projects is the Kinderheart Center in Giessen. There, one is currently preparing to prepare a request for support from the Children's Heart Foundation.
On the basis of this project design, we were able to establish that we have already promoted a similar project in Tübingen. We then launched a cooperation between the doctors in Giessen and Tübingen. This way, our resources for the heart children can be used even more optimally.
On its website, there is currently no documentation of the research results financed by donations from the Stiftung KinderHerz. Will this change soon for the benefit of their donors?
At present, we are very keen to make the results of our research projects more visible to the public. In the past year, we have set up an area on our website that will be used to document reports, data and research results. This area is currently not yet released.
So far, we have informed our donors about the use of donations and research results through a regular newsletter. As an organization, we face a certain dilemma with this question.
In what way?
On the one hand, we are encouraged to keep the administrative costs as low as possible in the interests of the heart children. On the other hand, social discourse shows that donors in Germany are increasingly interested in the use of donations and the results.
For this we would have to hire more staff and that would only be at the expense of the heart children. Under the present conditions, we have therefore decided that assistance for children with heart problems is more important than an even more comprehensive documentation. Our donors have also supported this decision so far.
OpenScience now offers the opportunity to document research results openly and transparently, to accelerate the dissemination of knowledge, and to develop new techniques and procedures more quickly. Does the Children's Heart Foundation take advantage of the possibilities offered by Open Science in the implementation of research projects?
The implementation of Open Science is so far, so I can say the principle, not yet provided. But it is an interesting approach, which should be considered more strongly in the future. It is certainly also a matter of convincing our co-operating doctors.
To date, the physicians have published their research results primarily in renowned specialist publications. Certainly an intensified social debate about Open Science would be helpful in making this form of collaborative work usable for our research projects and reducing barriers.
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